Wait Is Long For Disability Services

At a meeting of the Kansas Disability Caucus this month, a federal official announced that the US Department of Health and Human Services was finishing a report that shows Kansas is not in full compliance with a law that protect rights of residents with disabilities.

Almost 5,000 Kansans with developmental disabilities are on a slow-moving waiting list for services, which US Attorney for Kansas, Barry Grissom, said was a violation of the integration mandate in the American’s with Disabilities Act.

(Jill playing the Piano)

Jill Hershey plays piano in her parents’ home in Wichita. Both former music teachers, Donna and Jay Hershey introduced Jill to the piano at a young age.

Jill has Down Syndrome and was born in what her parents call the dark ages of mental retardation.

At birth, her doctor suggested institutionalization and predicted that Jill would never read or write. The Hersheys chose not to institutionalize, and Jill did learn to read and write and play piano – something she has been doing now for 31 of her 47 years.

Hershey: I don’t mind telling our age, I’m almost 74 and my husband is 80. We are not going to be able to care for her a whole lot longer, and that is what makes us extremely nervous.

Jill Hershey is number 1,432 on a waiting list of almost 5,000. Tim Wood is campaign manager of the “End The Wait Kansas”, a new campaign to work toward eliminating the waiting list for people with developmental disabilities in Kansas.

Wood: The waiting list really consists of two separate lists, one is the under-served, which are people that are actually getting some of the services that they need, and then there is the un-served list, which are receiving absolutely no services. The average wait time for both those lists is approximately 30 months each.

But some people, like Jill, wait much longer. She has been on the list for group home placement since 2008, and although she has some services, her mom Donna says she doesn’t have what she really needs.

Hershey: We have planned all these years for the future for Jill. We have set up a special needs trust. We have put into plan guardianship on our part; we have done everything we can. The only thing that we can’t do – that we have not been able to accomplish, and it doesn’t look like we are going to be able to is to, be assured of the fact that she has a place to live.

With the help of their case manager, the Hersheys say they have tried everything to get Jill into a group home. Their last resort was to try and get their situation recognized as a crisis, but authorities told Donna that a crisis funding would only be available if Jill was harming herself or others.

Hershey: So that is why I am saying it looks like an impossibility, and I talked to someone the other day and he runs a program in eastern Kansas. He said the only way you can do it right now is to throw her out on the street.

One hundred forty miles northeast in Topeka, Wendi and Jenny Unrein thought they were in a crisis situation after finding out that their caseworker had forgotten to put Jenny on the waiting list.

After almost five years they checked in on their status only to find out they were nowhere on the list.

Wendi: And the sad part is the wait is so long, I mean it is so long.

Wendi says they were mainly looking for employment services, but have since taken matters into their own hands, starting a small business that allows her to stay home and be with Jenny.

Just behind their home in a more rural part of Topeka is a small shed that Wendi’s husband turned into a studio.

Wendi: This used to be our mower area, and I asked, ‘Can we have it?’ and I thought he was going to gut it, but he put a/c and heating in.

The small space is brightly decorated in pink and green and blue fabrics and covered in art and art supplies. This is the headquarters for Jenny LU Designs, a small business run by Jenny and Wendi.

Wendi: She will draw here, and she will give them to me. These are all in Jenny’s colors.

Jenny and Wendi work as a team creating art pieces, birdhouses, note cards, calendars, jewelry and magnets. Jenny does the drawing and as a former art teacher, Wendi does the color and mounting.

Jenny has a rare genetic developmental disorder called William’s syndrome, and first got the idea to sell her art from an Oprah show.

Jenny: These two girls had a lemonade stand and donated their money for cancer research, and I wanted to do something about it because William’s kids are kind and friendly.

Now aside from raising money and awareness about William’s syndrome and modestly contributing to the Unrein household, Jenny LU Designs is providing inspiration to other people with developmental disabilities and their families by showing that there are options besides just waiting for state services.

Wendi: Show them that you can do other things besides sending them to a grocery store, not that that is wrong because it is not and she has done that, too, but to me it gives them an opportunity to think about having their own business and just looking at their strengths and looking at that.

Kansas isn’t the only state with a waiting list, and as budgets get cut and funding is tight, more and more states have to withhold services from multiple segments of the population.

But, says Kevin Fish executive director of the ARC of Sedgwick County, a non-profit that serves people with intellectual and developmental disabilities, the waiting list pre-dates the recession.

Fish: The system changed about 16 years ago, with the Developmental Disability Reform Act in the state, and there was a big push nationally for them to achieve their highest level of independence. But the need the state wasn’t prepared for. And so almost from the first year there developed a waiting list and so you know, essentially we are de-institutionalizing. So that is no longer an option, and we are going to push for community inclusion, but then that door that they have to go through started shutting on them pretty quickly.

And even though institutionalization is significantly more expensive than providing care within the community, Fish says at this point even money couldn’t fix the waiting list problem.

Fish: The reality is that the community is not prepared for it either. These service providers over the last two years have cut back on the number of staff that they have, so if all the sudden they have all these people who have to move into a group home, they would have to build more houses, you know, there has to be a systematic approach with the state and you know, OK a three year approach where you start taking a certain about of people off the list.

A three-year approach is exactly what “End the Wait Kansas” campaign manager Tim Wood is working on. And after only seven months at work, he has seen some progress.

During the last legislative session, $6.6 million was allocated for people with developmental disabilities, and last week SRS announced that money would restore funding for individuals who lost it this year, and then be used to take people off the waiting list.

But, said Wood, there is still work to do.

Wood: As long as we are fortunate enough to call this state our home, we will face this issue and similar issues with the way our population demographics are shifting, the baby boomers are getting older, they are going to be needing more long-term care and supports. This is going to be a challenge, but we have to prioritize these services, its essential.

With pressure from the federal government about Kansas’ non-compliance with the integration mandate of the ADA, “End The Wait Kansas” and the almost 5,000 people on the waiting list will likely see another good year for developmental disabilities, the big question will be, where will the money and resources come from?